hard to find the words
We began the week with optimism that it would be one full of progress and improvement. While Logan is slowly showing signs he's getting stronger, this is turning out to be the most difficult week of our journey thus far.
First of all, I truly feel that your prayers for Logan are working. He is getting some nutrition (Pediasure) through a feeding tube that was placed down his nose, all the way into his intestine. This way, his stomach is bypassed to allow more time for the g-tube site to heal. So that's praise #1. Second, we have begun to slowly lower his Versed sedation medication. This will hopefully allow him to begin breathing better on his own and allow his digestive system to get moving again. The fear with lowering the sedation is that these meds are aiding in seizure control, and reducing them could cause breakthroughs in seizures. So we're praying that does not happen. We still have a way to go before he is off the ventilator and we even begin to think about going home. But we are thankful for the baby steps at this point.
The difficult part is that we received results from Griffin's genetic test yesterday. Once again, we received news no parent should ever have to. Griffin is affected as well. He has the same genetic mutation as Logan, so he has Alper's too. Other than being slow to walk on his own, he has shown no signs of developmental delay nor any other symptoms, so we were certain his test was going to come back negative. We are planning to consult with Logan's doctors to see if there is anything preventative we can do right now, other than wait for his symptoms to appear. Going through this with Logan has been just about all we could handle, and the thought of doing this all again and seeing another child suffer is unbearable. Griffin has been our joy and our hope, making us smile at all the right times. To say we are heartbroken and devastated would be a severe understatement. While we know in our hearts there is a greater purpose at work, we are really struggling to process at this point.
As always, thank you for your prayers. We need them now more than ever.
First of all, I truly feel that your prayers for Logan are working. He is getting some nutrition (Pediasure) through a feeding tube that was placed down his nose, all the way into his intestine. This way, his stomach is bypassed to allow more time for the g-tube site to heal. So that's praise #1. Second, we have begun to slowly lower his Versed sedation medication. This will hopefully allow him to begin breathing better on his own and allow his digestive system to get moving again. The fear with lowering the sedation is that these meds are aiding in seizure control, and reducing them could cause breakthroughs in seizures. So we're praying that does not happen. We still have a way to go before he is off the ventilator and we even begin to think about going home. But we are thankful for the baby steps at this point.
The difficult part is that we received results from Griffin's genetic test yesterday. Once again, we received news no parent should ever have to. Griffin is affected as well. He has the same genetic mutation as Logan, so he has Alper's too. Other than being slow to walk on his own, he has shown no signs of developmental delay nor any other symptoms, so we were certain his test was going to come back negative. We are planning to consult with Logan's doctors to see if there is anything preventative we can do right now, other than wait for his symptoms to appear. Going through this with Logan has been just about all we could handle, and the thought of doing this all again and seeing another child suffer is unbearable. Griffin has been our joy and our hope, making us smile at all the right times. To say we are heartbroken and devastated would be a severe understatement. While we know in our hearts there is a greater purpose at work, we are really struggling to process at this point.
As always, thank you for your prayers. We need them now more than ever.
I have no words other than to simply say I'm so sorry and I will be praying for you all. I'm so, so sorry
ReplyDeleteSweet Karlee! My heart is breaking for you. I am so sorry you are facing these challenging times and pray that God continues to lift you up! Love you all!
ReplyDeleteOh Karlee... I'm so sorry. I'm so sorry this is happening... I can't imagine the pain in your heart. My heart is aching for your wonderful family. Again, if there is anything we could do, please let us know... Sending hugs. Heather
ReplyDeleteI am heartbroken! Praying for true miracles here and for unexplained healing and peace and comfort. I'm so sorry, Karlee.
ReplyDeleteOh my goodness, I am so sorry to hear this Karlee. My heart is breaking for you... and again I ask the question, why do these awful things happen to good people? We will keep you and your sweet family in our prayers. Praying for peace and comfort for you, your husband and extended family. xoxo
ReplyDeleteHi Karlee and family,
ReplyDeleteI am Veronica's mom from Alpers Awareness and I'm so sorry to hear about Griffin's diagnosis. It is devastating. Please know that you, your kiddos and the rest of your family are in our thoughts. They really are special kids, and loved through and through.
I'm new here, and this is the first time I've read your blog—and heard about your plight. The only words that come to mind are from the prophecy at Revelation 21:3,4: "God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” God promises that soon, suffering, grief, disappointment, hurt, and agony will all be things of the past. Isaiah 65:17 promises that your current heart break will not even be called to mind. My hope is that this thought provides at least a drop of comfort for you. God will shortly bring relief to all mankind, including you and your family. Much love.
ReplyDeleteKarlee - I met Lauren the other day and saw the anguish in her eyes at my mention that you and Jeff are in our prayers. Lee Anne and I have thought about you and Jeff so often - and of course Logan. Griffin is now in our prayers as well. I know your grief because it lives within me every day. But I also know that hope is stronger than grief and I am praying you both can keep looking for hope. Words don't seem to capture the moment, so one thing I've tried to do in my moments of saddness is find encouragement and strength in the words of others. I found this today and hopefully it gives you both encouragement and strength. God isn't done here.
ReplyDeleteThe tears I feel today
I'll wait to shed tomorrow.
Though I'll not sleep this night
Nor find surcease from sorrow.
My eyes must keep their sight:
I dare not be tear-blinded.
I must be free to talk
Not choked with grief, clear-minded.
My mouth cannot betray
The anguish that I know.
Yes, I'll keep my tears til later:
But my grief will never go.”
― Anne McCaffrey, Dragonsinger
Renzi
Lifting you all up in my prayers. Praying hard.
ReplyDeleteFound you via Laura Steen's tweet to Kelly Stamps. I've read about 2 pages worth of your posts, and wanted to let you know that I'll be praying for you and your beautiful family. And that I'm adding Deut 31:6 to my journal of scripture. I keep a small book of scripture that has special meaning, and I really do like this one. I have dealt with my own fear lately with my father's health. He also has liver problems and was in septic shock recently. It is such a scary place to be. Finally, I appreciate what you said about not being afraid to say the nice things you are thinking. (I guess that's why I'm posting now.)
ReplyDeletepraying for your family
ReplyDeleteThis is the first time I read about what is going on with your boys and I am absolutely flooded with grief. I spent time today on my knees before the Lord pleading with him for their healing. I know Jesus loves those boys so much and is hurting right along side you. Praying for his nearness and peace.
ReplyDeleteYou don't know me but I saw a link to you blog on Facebook with a picture of your beautiful family and I was intrigued to read it. Please know, I am so sorry for you all and will pray for ultimate healing for your sweet Logan and Griffin.
ReplyDeleteI am so terribly sorry to hear this news. Praying for strength for you and your husband, as well as healing for your precious boys.
ReplyDeletelifting you all up in prayer. cling to Him. cling to Him. 2 cor 12:9
ReplyDeletexoxo.
Karlee, I'm just now learning of your story and your struggle, but please know that I am stopping right now to pray for you all. You are being held up by so many.
ReplyDeleteI saw a link to your blog on twitter and I literally just read every single blog post. I cried through most of them. I can't imagine the anguish that you are feeling today. But I pray, asking HIM to cover you with peace, to comfort you only in a way that HE can, and to fill your hearts with hope. One of my favorite songs, is "Where I belong" by Building 429 ... "When the world shakes I want to be found in you ... When the lights fade I want to be found in you ... So when the walls come falling down on me. And when I'm lost in the current of a raging sea. I have this blessed assurance holding me ... Take this world and give me Jesus ... this is not where I belong." Praying for your sweet boys and for you and your husband!
ReplyDeleteKarlee, I am so sorry to read this news. Your boys are absolutely beautiful. I am thinking about you all and praying for your family constantly.
ReplyDeleteI was linked to your blog via Alpers Awareness Foundation on Facebook. I have no words, I can't even imagine processing all of this news. Your boys are beautiful and loved. I hope that peace and love and healing and comfort come to all of you. I do not know you, but I will be praying for your boys and your family.
ReplyDeleteDearest Karlee and Jeff and family,
ReplyDeleteI continue to pray for you and your sweet boys.
"You know the struggles that we face, Lord.
You know just what we need to endure them.
Give us the confidence to trust You because of Your goodness
and to walk by faith." Amen
Love in Christ,
Judie McBride
Karlee and Jeff- My name is Amber Dunn Thomas. I used to babysit Lacie, Jeff and Brantan. I heard about your struggles through Lacie on Facebook. My heart breaks for you and your sweet boys. I am praying for you. We had a scare with one of our children (very very mild compared to yours, but still a scare) Our 12 year old came home from school unable to walk or talk coherently. We messed around with the pediatric neurologists here in OKC, and they just kept giving him different meds, but never really examining him. Well, me and my pediatrician felt that something had to give. She could not get us in to see any neurologist in OKC, and Tanner had fallen over, and struck his head, and was regressing. She finally called the neurology department at Cook's Childrens Hospital in Fort Worth Texas. Tanner and I drove down and within 12 hours of being admitted, he was returning to some sort of normal conversation (after 3 weeks of not having). The walking issue was not fixed until 36 hours after being admitted. Anyway we came out of the hospital after 4 days with a diagnosis of cerebral palsy diplegia. The reason I am telling you this, is please, do not be afraid to search for other doctors to help you. I feel it saved my son. He was slipping away from us. While walking will always be a challenge, and talking will be affected when Tanner is sick, the doctor's at Cooks helped us. So if you are ever frustrated here, I recommend the trip to Fort Worth, for guidance. The head neurologist at Cooks used to be the head neurologist at OKC Childrens. He got frustrated with the hospital here, so he moved and has established an amazing place. Cooks employees, have researchers and a full library, that parents can use and ask questions. They are amazing with children. Just a little info for FYI. I am adding you to my family's prayer list and will alert my friends to pray for your family too.
ReplyDeleteThis is heartbreaking. I am praying for healing and miracles. I am praying that HE will give you peace and help you maintain your amazing faith.
ReplyDeletePrayers go out to your sweet family!
ReplyDelete